Road race: Action For Aidan 5K is 'heartwarming' community event

If there were ever a reason to run a race, 6-year-old Aidan Carter is it, as he battles Hunter's Syndrome, a rare genetic disorder for which there is currently no cure. On Sunday, the Action For Aidan 5K will take place at Exeter High School with proceeds to support research into finding a cure for the disorder, which Jen Carter, Aidan's mom, acknowledges has been overwhelming.

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By Rob Levey

seacoastonline.com

By Rob Levey

Posted Jun. 27, 2014 at 2:00 AM

By Rob Levey

Posted Jun. 27, 2014 at 2:00 AM

» Social News

If there were ever a reason to run a race, 6-year-old Aidan Carter is it, as he battles Hunter's Syndrome, a rare genetic disorder for which there is currently no cure. On Sunday, the Action For Aidan 5K will take place at Exeter High School with proceeds to support research into finding a cure for the disorder, which Jen Carter, Aidan's mom, acknowledges has been overwhelming.

"It is a progressive disorder that damages boys' hearing, hearts, lungs, joints, bones, and brains," said Jen Carter, who noted it primarily affects boys, most of whom die by the second decade of life. "The inability to protect my son and have to face his mortality is overwhelming."

Since his diagnosis, however, Aidan has served as a lightning rod for the greater Seacoast community, as more than $80,000 has been raised since Action For Aidan was founded in 2010.

"The support and love we have received from the community has been wonderfully overwhelming," said his aunt, Brooke Carter. "The complete strangers that have touched our lives or made any effort to help, as well as our family and friends, is something we never expected. ... The community has really embraced Aidan, his family and our event."

Noting this is their second year as a sponsor, Eric Cimon of Access Sports Medicine & Orthopaedics said the race and reasons for it are "heartwarming."

"We first got involved, because one of our physical therapists is good friends with the Carter family and she brought Aidan's story to our attention," he said. "Once we learned what a sweet little boy he is and the struggles that he and his family have been going through, we realized how important it was to try to help."

As for Aidan's prognosis, Jen said they are not entirely sure, but noted they are doing all they can for him in the meantime.

"Aidan is one of the youngest boys to receive weekly enzyme replacement therapy, which was approved by the FDA in 2007," she said. "Aidan receives weekly 4-hour infusions, but this is to hopefully slow the progression — it's not a cure."

In reflecting on everything her brother Tripp and sister-in-law Jen have experienced in their fight for Aidan, Brooke feels it is important she not only publicly express her admiration for them, but for Aidan, too.

"Even having had eight surgeries and an endless number of doctor appointments, Aidan is always smiling and is just like every other 6-year-old with superhero obsessions and endless energy," she said. "I am proud to be his aunt and I know he will continue to be an inspiration for other boys like him."

Currently at 225 registrants for Sunday's race, Brooke said they hope to have more than 400 registrants on Sunday. Registration is $20 for individuals and $45 for families.

"We don't have a limit as we want as many families and people to join us for this fun day," she added.

To make a donation if you cannot attend the race, or to register online, visit www.actionforaidan.org before 3 p.m. on Friday. Same-day registration at the race will be available.

For more information, email aidanswalk@gmail.com.

Rob Levey is an avid runner and Somersworth resident who works in Portsmouth. He can be reached at roblevey@gmail.com.